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Started Repatha - Side Effects

Heart & Blood Health | Last Active: Apr 6 10:09am | Replies (190)

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@sueinmn

I'm not sure where you are located, but in MN I had two awful experiences with cardiologists inside my provider group, and was "fired" due to inability to tolerate statins by each one. For several years I worked on diet, exercise and supplements, but my LDL continued to rise at every test.

Fast forward to 2023 - a new PCP who insisted I try again after she looked at my risk profile (huge family history -heart and stroke - at my age or younger, including parents, siblings, cousins...) She did a lot of research and found 2 she thought I might tolerate, started each slowly with very low dose and alternate days but within 90 days on each I was back in major pain, no matter what adjustments we tried. I quit in April & told her why. Spring 2024 she offered a cardiology consult, and I told her my experience - she located a new one, in a different practice, known for treating statin-intolerant patients.

Summer/Fall 2024 during my consults, the cardiologist offered Repatha, and before I even got started on the med, which required prior approval, I was referred to cardiology by the ER for irregular ECG, angina, shortness of breath & a possible heart attack (it wasn't) - to another doc in his group! Extensive testing followed, confirming soft plaque, an LAD blockage and a few other issues.

My kids (RNs) & spouse thought I was headed for angioplasty, but I wanted no surgery at this time. The new doc agreed to a trial of Repatha & 3 other meds for 6-9 months. So far, so good LDL down, SOB resolved, angina pain gone and tolerable side effects from the meds. We shall see in May whether this is enough for me (the fourth of my 5 younger sibs just reported stent placement yesterday.)

So, should I have been "pushy" sooner in getting to see a better doctor? Should an earlier doc have ordered further (expensive) testing, even before I was symptomatic? Or is it enough to rely on established protocols (which for heart disease are pretty accurate based on a number of studies)?

Today I feel like I am lucky and in a good place. This cardiology group also includes as lipid clinic with follow-up by specially trained RNs and PAs every 30 days to confirm compliance with med, diet & exercise guidelines - a package deal, not just "more pills." They are also part of the Heart Center in our local large suburban hospital, so all other specialties are on site. A family member who cannot tolerate any statins/alternatives also is treated there, with a lot of close monitoring and health coaching.

I am fortunate my PCP found a good place for me to "land". Can you search (maybe via a local Heart Specialty Center in a hospital) for an integrated practice near you?

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Replies to "I'm not sure where you are located, but in MN I had two awful experiences with..."

Thank you so much for your detailed response. I tried Repatha, twice. Can’t take it due to extreme side effects. I am looking for a doctor that will think outside the box and consider alternatives.